Introduction: The transition to young adulthood can be a turbulent life stage, and this is often magnified for autistic youth. Young adults frequently profess different goals and values than their parents. While there is some indication in autism research about how parents, and to a lesser extent, autistic young adults, feel about this transition, little research leverages dyadic interviews with both populations or has used this method with Black and/or low-income families.Method: We conducted four sets of dyadic interviews with autistic young adults and their parents who live together.Results: We identified three key themes that both groups found important to the transition: independence, structured transition, and interpersonal relationships. However, we found that how the groups conceptualized these themes were divergent and revealed differences in goals and values. Parents were more oriented toward long-term normative views of fulfillment, whereas young adults spoke about what was meaningful to them currently.Conclusion: This work has implications for changes to how autism research will conceptualize the transition to young adulthood and how we can create better social opportunities for this population. Community brief Why is this an important issue?Autistic adults are at risk for difficulties getting work and education, which can lead to them feeling alienated or unfulfilled. Most research on autistic people becoming adults is based on White people with more cultural and financial resources and does not ask autistic people themselves or their families with them. Research is needed to improve transition outcomes for these underresearched and underserved groups. What was the purpose of this study?This study explored how autistic youth and their parents thought about and experienced the transition to adulthood out of an urban, low-resourced school district. What did the researchers do?Researchers interviewed four parents and four autistic youth. Three families were Black, and one family was White and from a low-income household. All autistic youth had received special education services, needed support to transition to adulthood, and had finished high school 1 to 6 years before the study. The young adults lived with their mothers and received support from them for daily tasks. We interviewed the parents and then the youth. In some cases, youths joined parents' interviews or parents joined youths' interviews to provide help with remembering information or giving answers. What were the results of the study?Researchers identified three themes. First, parents and youth thought about independence differently. Parents focused more on work and financial independence. Youth focused more on social aspects of work and having independence in daily activities such as shopping. The second theme was that youth and parents approached ongoing structured supports differently. Youth reported positive experiences with a range of services but did not discuss the need for ongoing supports like their parents did. Third, youth emphasized the importance of social relationships and opportunities to connect with peers through shared interests. What do these findings add to what was already known?We learned that standard questions about transition may not reflect how autistic youth and their parents think about becoming an adult. Interviewing families coming out of a predominantly Black and low-income urban school district helped us to understand how these groups experience and think about the transition to adulthood, even though they did not use these identities as a logic for how they thought about young adulthood. This suggests that parent and youth perspectives differ in groups that are not usually well represented in research studies related to transition for autistic youth. What are potential weaknesses in the study?This study only included a small number of youth and parents. These results do not represent all Black autistic youth or low-income autistic youth coming from urban school districts. Families who are less connected to services may have been less likely to hear about or take part in the study. How will these findings help autistic adults now or in the future?These findings could inform the development of better interviewing approaches and research to address the needs of diverse autistic youth entering adulthood. This work could improve transition support. Parents, youth, support providers, and researchers may think about adulthood differently. Improved support could help build mutual understanding and coordination around youths' and their families' goals.

BACKGROUND AND OBJECTIVES:Approximately 1.2 million autistic youth will reach the legal age of adulthood over the next decade. Given dynamic changes in the socioecological context of the transition to adulthood, we produced an updated transitions research agenda reflecting the perspectives of autistic young adults, care partners (parents), and professionals who use autism research. METHODS:We conducted 9 focus groups: 4 young adult, 4 care partner, and 1 professional, with 59 total participants. Young adults were grouped by self-reported identity: (1) racial and ethnic minority, (2) lesbian, gay, bisexual, transgender, queer, intersex, asexual, and other identities, and (3) nonspeaking, in addition to a general group. We selected care partners who supported youth with varying intensity of support needs. We used rapid qualitative inquiry methods to extract key points from answers to semistructured interview questions. RESULTS:Delays in diagnosis and transition processes, and placement on wait lists resulted in significant obstacles to successful transitions. Parents assumed a dominant role by coordinating services, navigating systems and identifying opportunities for community participation, and providing direct supports. There was an overarching need for inclusion of autistic people in transitions research and consideration of cultural differences in priorities and values. Participants prioritized investigation of variation in transitions among autistic youth with intersecting identities, navigation support (eg, peer mentors), efficacy of services and supports (eg, transition and employment services), differences in available services by location, and problems within specific benefits programs. CONCLUSIONS:Research should focus on understanding population-level factors of system performance on outcomes and support needs, service delivery among marginalized groups, and transformation of complex service ecosystems.

Policy Points Employment is a key social determinant of health and well-being for the estimated 5.4 million autistic adults in the United States-just as it is for citizens without disabilities. Evaluation and monitoring of publicly funded employment services is paramount given the dramatic increases in adults with autism who need job supports. Vocational Rehabilitation agencies appeared to be absorbing short-term employment needs of autistic people, but Medicaid was severely lacking-and losing ground-in serving those who need longer-term employment services. Across both Vocational Rehabilitation and Medicaid, we estimated that only 1.1% of working-age autistic adults who potentially need employment services are actually receiving them-leaving an estimated 1.98 million autistic individuals without the employment services that are associated with achievement of well-being. CONTEXT:Employment is a key social determinant of health. As such, high rates of unemployment, underemployment, and poverty across the rapidly growing autistic population are concerning. A web of publicly funded services exists to support the employment, and associated health and well-being, of United States citizens with autism and other intellectual and developmental disabilities, namely through Vocational Rehabilitation (VR) and Medicaid home- and community-based services (HCBS) waivers. Given an absence of overarching surveillance of employment services, this study aimed to characterize the distribution of autistic service users across Medicaid versus VR, understand the types of employment services utilized within these programs and expenditures, and assess overall capacity to provide employment services as needs continue to increase. METHODS:This study examined the distribution of employment services among autistic people compared with those with intellectual disability using 2008-2016 data from the Centers for Medicare & Medicaid Services and the Rehabilitation Services Administration. Estimated need for employment services among autistic individuals was compared with capacity derived from VR service counts and a review of HCBS waivers. FINDINGS:The number of autistic people served through VR tripled during the study years, whereas those served through Medicaid only increased slightly. VR spending increased by 384% over the study years, whereas Medicaid costs decreased by 29%. Across VR and Medicaid, we estimated that only 1.1% of working-age autistic adults who needed employment services received them. CONCLUSIONS:Although VR appeared to be absorbing short-term employment needs of autistic individuals, Medicaid was severely lacking-and losing ground-in serving those who needed longer-term employment services. VR far outpaced Medicaid in both the number of autistic people served and total expenditures across the study years. However, an estimated 1.98 million autistic adults did not receive employment services that could be critical to improving their health and well-being.

Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.

Medicaid is the largest source of public health insurance in the U.S. In 2018, Medicaid provided public health insurance for 97 million low-income citizens in the U.S. including 9 million people with disabilities of all ages. In 2020, nearly one in every five people in the U.S. were ensured by Medicaid. Medicaid is important for autistic people and their family members. Yet, we know that autistic people and their families face difficulties navigating the process to enroll in Medicaid and then accessing the services Medicaid covers. While there are many publications that explain basic facts about Medicaid, and information about Medicaid for autistic individuals, few focus on the how autistic people use this public insurance or on what services Medicaid covers for children, youth, and adults on the autism spectrum. This report explores these topics using data from the Centers for Medicaid and Medicare Services (CMS) from 2008-2016.

Introduction: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network.Methods: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities.Results: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected.Conclusion: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversityoriented approach to health promotion.

Children and youth with special health care needs (CYSHCN) commonly experience mental health concerns, but conditions are often not identified or treated within primary care. Mental health care is often not a primary focus of pediatric primary care, but the medical home model has potential to address these concerns more adequately. The purpose of this study is to examine the relationship between the medical home and use of mental health services in CYSHCN. Data came from the Medical Expenditure Panel Survey years 2015–2017, a nationally representative survey of health and healthcare in US families. The study included CYSHCN ages 6–17. We compared the use of mental health services, expenditures, and psychotropic medications across CYSHCN with and without a medical home using multivariable regression. 45

BACKGROUND:Sexual and reproductive health services promote the ability of people to have safe, satisfying, non-coercive sexual experiences and make informed decisions about pregnancy. Stakeholder input is needed to understand barriers or facilitators to service access for autistic people, who report unmet needs.METHODS:We recruited 18 autistic people, 15 parents, and 15 service providers in the United States to participate in an interview and two surveys. Using their input, we created a conceptual model of sexual and reproductive health service needs, access barriers, and facilitators.RESULTS:Stakeholders rated a variety of sexual and reproductive health services as important for autistic people, including those with intellectual disability or minimal verbal language. Stakeholders identified barriers to sexual and reproductive health service utilization including lack of service availability, lack of service providers with autism or neurodiversity training, lack of accurate information about autism and sexuality, verbal and communication differences that are not accommodated by service providers, and socio-cultural attitudes about sexuality. Stakeholders identified facilitators to service access including person-centered, trauma-informed care, service accommodations such as clear and detailed expectations, and long-enough appointments. We created a conceptual model based on the social ecological model of health to organize these utilization factors and support future research, provider, and policy action. Stakeholders provided feedback and responded favorably on the model's accuracy, utility for spurring research, practice, and policy improvements, and application to diverse groups of autistic people.CONCLUSIONS:The model shows the many feasible ways to support equitable access to services for autistic people.

OBJECTIVE:It has been suggested that the sequelae of trauma are under-recognized in youth on the autism spectrum. We aimed to generate expert consensus regarding important trauma indicators, including but not limited to traumatic stress symptoms, in autistic youth. METHODS:We recruited 72 experts in autism and/or childhood trauma. Via a 2-round Delphi survey, experts commented on and rated the importance of 48 potential indicators, drawn from PTSD criteria and a broader literature on traumatic sequelae in autism. A revised list of 51 indicators, 18 clinical guidelines developed from expert comments, and summaries of expert qualifications and ratings from Round 1 were submitted to a second round (n = 66; 92% retention) of expert review and rating. RESULTS:Twenty-two indicators reached consensus (>75% round 2 endorsement). Many, but not all, reflected PTSD criteria, including intrusions (e.g., trauma re-enactments in perseverative play/speech), avoidance of trauma-reminders, and negative alterations in mood/cognition (e.g., diminished interest in activities) and in arousal/reactivity (e.g., exaggerated startle). Experts also identified increased reliance on others, adaptive and language regressions, self-injurious behavior, and non-suicidal self-injury as important indicators. Consensus guidelines emphasized the need for tailored measures, developmentally informed criteria, and multiple informants to increase diagnostic accuracy. CONCLUSIONS:Expert consensus emphasizes and informs a need for tailored diagnostic guidelines and measures to more sensitively assess traumatic reactions in autistic youth.

The stressors autistic individuals encounter and experience as traumatic may vary from non-autistics. We conducted a qualitative study to identify potential sources of trauma for autistic individuals and evaluate correspondence with a standard measure. We enrolled autistic adults (N = 14) and caregivers (N= 15) with varied adversities, levels of functioning, and socio-demographics. Participants completed standard measures of autism, traumatic exposures and stress, and qualitative interviews, which were submitted to thematic analysis. A wide range of experiences were described as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and caregivers described sources of trauma in interviews not captured by standardized measures. Varied stressful experiences, many not detected by a standardized measure, may have a traumatic effect on autistic individuals. Whereas some reflect commonly recognized trauma sources, others may reflect particular vulnerabilities for autistic individuals. Results have implications for assessing traumatic events and understanding their contribution to mental health inequities in the autistic population. Lay abstract The stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group.

This report examines the following two questions: 1) do income-based differences in health and health care outcomes look the same for children with and without autism? and 2) do income-based differences in health and health care outcomes look the same for BIPOC (Black, Indigenous, and People of Color) children with autism and white children with autism? Examining the health and healthcare outcomes of children with autism in combination with other social characteristics offers several advantages. First, we can illuminate how demographics alone, and in combination with other social characteristics of children, are associated with differences in the rates of health and healthcare outcomes they experience. Second, it increases our understanding of the health-related experiences of social groups who are often neglected in research. Third, it provides current and comprehensive evidence on how children with autism experience relative disadvantages related to social determinants of health, which are aspects of the environment that affect health, functioning, and quality-of-life outcomes and risks.

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

Approximately 100 000 autistic youths turn 18 each year, a rough approximation for the number entering adulthood. Population outcomes among autistic young adults are poor across indicators of physical health, mental health, employment, postsecondary education, community participation, independence, financial security, and access to needed community services. There is little evidence that we have moved the needle on these population-level outcomes over the past 15 years, despite growing attention to the needs of this group and an outpouring of investment in the development of patient-level clinical interventions. The focus on developing evidence-based treatments has not yet been matched by a corresponding investment in implementing interventions at a scale that can reach this growing population or in systems-level strategies for improving policy and program performance.1Historically, autism was conceptualized as a pervasive developmental disorder because difficulties typically manifest pervasively across domains of physical and behavioral health, motor and speech development, and social and emotional development. Thus, delivery of physical health care and health care transition in this population are almost always inextricably intertwined with other developmental domains and a need for communication and coordination with the patient, his or her family, and a myriad of other health and community service providers.2Recommendations for improving care coordination are commonplace in this field and targets for research and practice. However, few specific measures of care coordination exist beyond general questions asked of parents in health care surveys. Implementing continuous improvement practices is impossible without clear metrics to measure progress. A promising direction for measuring care coordination in a way that could inform iterative improvement cycles is the adaptation of social network measures.3 This is a priority of the Autism Intervention Research Network on Physical Health (AIR-P) research node at Drexel University.Medicaid plays a key role in the coordination of care and delivery of services. Poor employment prospects among autistic youth result in Medicaid being among the only potential insurers for this group. Hallmark Medicaid programs, including Section 1115 waivers and other programs that vary by state, can deliver a robust service array to eligible autistic youth. However, a thorough, population-level understanding of the pathways needed to navigate Medicaid during the transition of these youths to adulthood has not been established. There may be specific and modifiable aspects of Medicaid eligibility criteria that differentially affect access for aging autistic youth. The identification of Medicaid services used by enrolled autistic young adults will be a substantial advancement for AIR-P and may reveal avenues to boost the efficiency and effectiveness of service delivery.Across insurers, new service models for transition-aged youth with mental health and chronic health conditions, including peer support and service navigation, are being pilot tested. The adaptation of these innovative models to help autistic youth will be a key goal for AIR-P. Furthermore, among the most critical advancements needed to improve care delivered to autistic youth is reworking the connections between research and practice so that they are both more bidirectional (research informs practice and vice versa) and more efficient (innovation to scalable implementation cycles are faster). Robust networks that foster close connections among researchers, practitioners, and policymakers from the outset of innovation are poised to make much-needed headway for developing and implementing this burgeoning evidence base in a timely manner to truly move the needle on population-level outcomes.

To identify the state-level policies and policy domains that state policymakers and advocates perceive as most important for positively impacting the use of children's mental health services (CMHS). We used a modified Delphi technique (i.e., two rounds of questionnaires and an interview) during Spring 2021 to elicit perceptions among state mental health agency officials and advocates (n = 28) from twelve states on state policies that impact the use of CMHS. Participants rated a list of pre-specified policies on a 7-point Likert scale (1 = not important, 7 = extremely important) in the following policy domains: insurance coverage and limits, mental health services, school and social. Participants added nine policies to the initial list of 24 policies. The "school" policy domain was perceived as the most important, while the "social" policy domain was perceived as the least important after the first questionnaire and the second most important policy domain after the second questionnaire. The individual policies perceived as most important were school-based mental health services, state mental health parity, and Medicaid reimbursement rates. Key stakeholders in CMHS should leverage this group of policies to understand the current policy landscape in their state and to identify gaps in policy domains and potential policy opportunities to create a more comprehensive system to address children's mental health from a holistic, evidence-based policymaking perspective.

This paper used Social Security Administration program data from 2005 to 2019 to examine national- and state-level changes in the number of new adult supplemental security income (SSI) awardees on the autism spectrum relative to awardees with intellectual disability and other mental health disorders. We identified three main findings: the number of autistic awards increased between 2005 and 2019 when awards for all other mental health disorders declined; roughly nine out of every 10 autistic adult awardees were between ages 18–25 years; there was variation in the growth of autistic awards across states. These findings support the need to consider geographic and age differences in SSI program participation among autistic adults and determine the underlying causes.

The families of youth and adults on the autism spectrum provide vital supports across the lifespan. This report explores what family members report about autistic adults: the settings they live in, their access to services, opportunities to participate in their communities, and the choices they have about their services and supports. We also look at the characteristics of family members themselves, how they participate in decision-making and choices about services and providers, and the types of supports they may need themselves to identify and coordinate quality care and to best meet the needs of the autistic adult.

OBJECTIVE:Mental health conditions (MHCs) have substantial personal and economic costs for children with autism spectrum disorder (ASD); yet, a current population-based prevalence estimate is lacking.METHODS:This study included 42,283 caregivers of children (ages 3-17 years) from the 2016 population-based National Survey of Children's Health. Prevalence and correlates of caregiver-reported MHCs were estimated in children with ASD and compared with those in children with intellectual disability (ID), children with special health care needs (SHCN), and "all others" (no ASD, SHCN, or ID).RESULTS:77.7% of children with ASD had ≥ 1 MHC; 49.1% had ≥ 2. The most common MHCs were behavior/conduct problem (60.8%), anxiety problem (39.5%), attention deficit disorder (ADD)/attention-deficit/hyperactivity disorder (ADHD) (48.4%), and depression (15.7%). Substance abuse was the only MHC less common in ASD. MHCs were more common in youth with ASD versus SHCN, "all other" youth, and those with ID. MHCs were common in ASD by ages 3-5 years (44.8% ≥ 1 condition) and increased with age (85.9% ≥ 1 condition, ages 12-17 years). Among children with ASD, girls had twice the odds of an anxiety problem, those with ID had 4 times the odds of behavior/conduct problem, and those with childhood adversity had greater odds of an anxiety problem (odds ratio [OR] = 2.66) and ADD/ADHD (OR = 1.99).CONCLUSIONS:Caregiver-reported MHCs are prevalent in children with ASD in the US from a young age and characterize > 85% by adolescence. There is an outsized need for effective MHC assessment and treatment of these youth that demands expedient innovation in both MHC and developmental disability policy and practice.

OBJECTIVE:Children with autism spectrum disorder (ASD) may benefit from medication to treat a diverse array of behaviors and health conditions common in this population including co-occurring conditions associated with ASD, such as attention-deficit/hyperactivity disorder (ADHD) and anxiety. However, prescribing guidelines are lacking and research providing national estimates of medication use in youth with ASD is scant. We examined a nationally representative sample of children and youth ages 6 to 17 with a current diagnosis of ASD to estimate the prevalence and correlates of psychotropic medication.METHODS:This study used data from the 2016 and 2017 National Survey of Children's Health. We estimated unadjusted prevalence rates and used multivariable logistic regression to estimate the odds of medication use in children and youth across 3 groups: those with ASD-only, those with ASD and ADHD, and those with ADHD-only.RESULTS:Two thirds of children ages 6 to 11 and three quarters of youth ages 12 to 17 with ASD and ADHD were taking medication, similar to children (73%) and youth with ADHD-only (70%) and more than children (13%) and youth with ASD-only (22%). There were no correlates of medication use that were consistent across group and medication type. Youth with ASD and ADHD were more likely to be taking medication for emotion, concentration, or behavior than youth with ADHD-only, and nearly half took ASD-specific medication.CONCLUSIONS:This study adds to the literature on medication use in children and youth with ASD, presenting recent, nationally representative estimates of high prevalence of psychotropic drug use among children with ASD and ADHD.